End-of-life Care: In-depth - West Sussex Partners in Care



End-of-life Care: In-depthSummaryIncreasing numbers of people are expressing a wish to die in their home, which might be their own home or a care home, instead of in a hospital so that they can have their friends and family with them.Residential and domiciliary care providers, therefore, are likely to be involved in the care of people who are terminally ill. When involved they must follow current national best practice end-of-life care standards with staff trained to achieve them.The quality of the care that service users receive in their last days is just as important as the quality of life which they experience prior to this; perhaps even more so. The physical and emotional needs of service users must be met as they die, their comfort and wellbeing should be attended to and their wishes respected. Their pain and distress should be controlled and their privacy and dignity maintained.A dying person must be given personal, physical and emotional care to high standards to enable them to die with dignity, in comfort and free from pain, surrounded by people who care for them. The NHS End-of-life Care Programme and its successors show how the quality of end-of-life care across the spectrum of health and social care services can be improved.The current coronavirus (COVID-19) pandemic has raised specific challenges for care home service users, their families and the staff with regard to End of life Care provision. Care home service users are particularly vulnerable to the infection and therefore outbreaks in care homes may prove to be devastating.Restrictions on visiting and social isolation or shielding have resulted in particular issues for those at the end of life and for service users with dementia.Employers' DutiesCare managers should:provide high-standard care and comfort to service users who are dying and ensure that they handle any deaths sensitively, respecting the feelings of the bereaveddiscuss with and carry out each person’s wishes concerning terminal care and arrangements to be made after deathwork in partnership with each service user’s family and friends to plan for and deal with increasing infirmity, terminal illness and deathalways maintain the privacy and dignity of any dying personsupport those who wish to offer comfort and emotional care to a person who is dyingwork in partnership with and under the guidance of any palliative care specialists involvedassess and review the changing needs of service users with deteriorating conditions or dementia so that they provide an appropriate care serviceobserve all required procedures after a service user has diedregularly review policies, procedures and training for end-of-life ply with guidance on Public Health England (PHE) residential care provision and ensure up to date guidance is accessed and followed, as coronavirus (COVID-19) requirements are dynamic.make staff aware of and comply with PHE: Care of the deceased with suspected or confirmed coronavirus (COVID-19) in the event of the death of a service user with suspected or confirmed coronavirus.Employees' DutiesStaff must:know and carry out the care service’s policies and procedures on end-of-life carealways treat all dying and deceased service users with the utmost respect and dignity, and respect their wishesrespect service users’ religion, faith and final wisheswork in partnership with each service user’s family and friends and other professionals to implement a person’s end-of-life care planoffer comfort and emotional care to any service user who is dyingaccept guidance and help from any palliative care specialists involvedreport service users’ changing needs and deteriorating conditionsfollow all required procedures after a service user has diedtake part in training in end-of-life care.follow COVID-19 PHE guidance on guidance on residential care provision, comply with recommended use of Personal Protective Equipment (PPE) and all appropriate infection control precautions to protect staff and residents.in the event of death of a service user with suspected or confirmed coronavirus, comply with: PHE: Care of the deceased with suspected or confirmed coronavirus (COVID-19).In PracticeCQC Standards ComplianceWhilst CQC inspections have been suspended during the coronavirus pandemic, there are no changes to the requirements to make notifications or the system used to make them. The CQC will be notified of deaths and events that, during this period, preclude continuation of providing service ‘safely and properly’ (regulation 18).This entails informing the CQC if service operation is being negatively affected by COVID-19 but not informing the CQC of minor or solitary COVID-19 related issues.The principles of person-centred care, which are central to the “fundamental standards” described in the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 — involvement, privacy, dignity, equality and diversity — underpin and apply equally to end-of-life care as to any other aspect of a person’s care and treatment.Care providers must make sure that an individual’s care and treatment at the end of their lives is well co-ordinated when it involves different providers and professionals who must work together for that person’s benefit.End-of-life care inevitably involves medical and social care staff working together as a team and in partnership with the person receiving the care and their relatives and friends. Necessary services and equipment will be provided as and when needed. Managers therefore have a duty to make sure that their staff work and are enabled to work in an integrated way.Managers and staff working in the context of end-of-life care will need to observe and comply with Regulation 11: Need for Consent, which is particularly relevant to people who might lack capacity and for whom care staff might have to carry out “best interest” decisions.It is important that care providers have information about any advanced decisions that could have implications for the services for which they are responsible as part of an overall plan of care, particularly in relation to “do not attempt resuscitation” (DNAR) advanced decisions.Key Question — Is it Responsive?The CQC will assess the quality of any end-of-life care provided with reference to the Key Lines of Enquiry (KLOE) 2017, R3: “How are people supported at the end of their life to have a comfortable, dignified and pain-free death?”Where a care service is responsible for or involved in providing end-of-life care, inspectors will ask about:people’s preferences and choices for their end-of-life care and where they wish to die, including people with protected characteristics covered by the Equality Act 2010; all issues must be clearly recorded, communicated to all concerned, kept under review and enacted (see R3.1)how the service involves all concerned in the planning, managing and making decisions about a person’s end-of-life care (R3.2)how the service ensures that people receive effective pain and symptom management with the full involvement of palliative care specialists; particularly if they are unable to speak or communicate their needs (R3.3)how quickly the service identifies people with changing and unpredictable needs in the last days of life so that they have rapid access to the appropriate care and treatment (R3.4)how the service supports other people involved in a person’s end-of-life care, including relatives and staff (R3.5)how well the service provides dignified and culturally appropriate after death care and support (R3.6).Quality ratingsA service will be rated according to the following characteristics.GoodA “good service” will meet all regulatory requirements as evidenced by the answers to the KLOE prompts as follows.The service has fully supported its users and relevant others to make their own decisions about their preferences for end-of-life care, including the involvement of other professionals and specialist services.Care staff understand people’s needs at this stage of their care, and have the knowledge and skills based on best practice guidance, to provide the care required. They deal competently and sensitively with specific needs such as those for people with dementia, and in their dealings with others involved.There is full recording and good communication between all involved.The service works with healthcare professionals, including palliative care specialists and others, to provide a dignified and pain-free death that is as comfortable as possible using all necessary medicines, aids and equipment, brought in as needs require.The service provides facilities and support to people’s family, friends and other carers, and for staff, before and after a person dies.Service users feel that their needs on the grounds of religion, culture and protected equality characteristics have been considered as part of the planning process and provisions have been made.Family, friends and other carers feel involved, listened to, informed and supported in the last days of a person’s life.OutstandingTo be rated “outstanding” the service will, in addition to the above, need to show the following.The service is particularly skilled at all aspects of end-of-life care.All needs have been considered as part of an end-of-life care plan, including language, communication, ability to understand and capacity when decisions are made.The service is most responsive in enabling people to engage with their religious beliefs and/or preferences at the end of their life.The service works closely with healthcare professionals and provides outstanding end-of-life care. People experience a comfortable, dignified and pain-free death.Professionals visiting the service say it is focused on providing person-centred care and it achieves exceptional results. The service strives to be outstanding and innovative in providing person-centred end-of-life care based on best practice.There is a rapid response to people’s changing care needs and advice on care and support for people and carers at the times they need.There are members of staff with the specific skills to understand and meet the needs of people and their families in relation to emotional support and the practical assistance they need at the end of the person’s life. Staff are also supported by the service with empathy and understanding.Requires improvementA service that requires improvement will have fallen short of what is required in specific aspects of their end-of-life care provision. Examples:the service does not recognise, or has little consideration for individual needs (religious, social, cultural, etc), which are not recorded or enactedthe service does not re-assess people’s end-of-life care needs regularlystaff are reactive rather than proactive and do not always work closely with healthcare professionals in the end-of-life care processstaff are aware of people’s end-of-life care needs but may not always appreciate the need for good end-of-life care and respond in good timesupport, equipment and medicines are not always provided in good timethe service does not always offer support to people’s family, friends and other carers, or staff, before and after a person dies.InadequateAn inadequate rated service will show serious weakness in its approach, as follows.The service does not consistently engage people in planning their end-of-life care, or record and act on individual wishes.Staff have not sufficient knowledge and skills for end-of-life care practice, including about human rights, they do not involve healthcare professionals to help people to have a comfortable, dignified and pain-free death.The care and treatment provided by the service is task-centred and general rather than person-centred.People’s religious beliefs and preferences are not known or are not respected.When someone dies, no support is offered to people’s family, friends and other carers, or to staff.Wales Standards ComplianceThe statutory guidance for the Regulated Services (Service Providers and Responsible Individuals) (Wales) Regulations 2017 apply to care homes and domiciliary support services. They refer to end-of-life care under Regulation 21: Standards of Care and Support — Overarching Requirements. Where a care service is involved in supporting people at the end of their lives it should do so by:having personal plans that reflect the individual’s wishes and preferences for their end-of-life care and support, including where they want to spend their last days, and respecting any advance statements and decision-makingworking in partnership with other professionals and agencies to provide end-of-life care and any palliative intervention of the required quality.The NICE End-of-life Care for Adults Quality StandardThe National Institute for Health and Care Excellence (NICE) has a quality standard for the care of adults approaching the end of life and for the support of their families and carers. (See QS13 and QS144, which covers care in the final days.)NICE sets out a range of markers, or statements, of what high-quality care looks like, covering issues such as communication, access to urgent care, the last few days and care after death.Care service managers should apply these standards in their end-of-life care policies and practice (see the forms tab for an evaluation framework based on the NICE quality standard).National Palliative and End-of-life Care Partnership Strategy for 2015–2020In September 2015, a new partnership of statutory bodies and charities produced a national framework to guide further improvements in end of life care. The framework is underpinned by six “Ambitions” (or goals).Everyone (approaching their end of life) must have opportunities to discuss their care arrangements with those concerned.Everyone must have fair access to care.People’s end-of-life care should ensure that they are as comfortable and free from distress as possible.Their care should be well planned and co-ordinated with ready access to help and support as needed.All staff involved should be able to provide competent, confident and compassionate care.The dying person’s immediate “community” should be encouraged to help and support one another practically and emotionally.(See Ambitions for Palliative and End of Life Care available at .uk.)Palliative and End of Life Care During Coronavirus PandemicDuring the coronavirus pandemic, there will be an increase in numbers of service users with palliative and end of life care needs. There will be some reaching end of life due to COVID-19 and some with unrelated conditions.Due to the dynamic situation and ensuing changes to health and care services there is likely to be greatly increased pressures on care homes and their staff. There is also an additional burden that social isolation puts on service users and their families with restrictions on contact and visiting.Evidence from other countries ahead of the UK in the COVID-19 pandemic suggests care home service users are specifically vulnerable to the infection because of existing co-morbidities and advanced frailty. Outbreaks in care homes have proven devastating and many service users are likely to have a poor prognosis if they become hypoxic secondary to COVID-19.Once care home staff identify a service user with suspected COVID-19, they should isolate them and commence use of personal protective equipment (PPE) and infection control processes immediately. The service users General Practitioner should be informed who will advise on a treatment plan and isolation requirements, to prevent transmission of COVID-19 to other service users.PPE required currently comprises gloves, aprons and face masks and eye protection where necessary. Details of PPE use is included in guidance from Public Health England (PHE) and must be followed. PPE requirements for care home staff are the same as those for hospital staff on general wards and should be provided for all staff.The Six Stage Model for Care PracticeThe End-of-Life Care Programme, which ended in 2013, issued useful guidance for care homes in The Route to Success in End of Life Care: Achieving Quality in Care Homes. It provides a six-stage model for an end-of-life care pathway that should help care services develop and implement their policies and procedures, practice standards and staff training. The six stages are as follows.Discussions with those concerned as the end of life approaches with the person who is dying at the centre of the discussions.Assessment, care planning and review, which should help to integrate a person’s specific end-of-life care requirements into their wider care planning and implementation.Co-ordination of care, which should involve a multi-professional team approach and range of services in line with the individual’s needs.Implementation of the agreed care plan to the standards required.Care in the last days of life, which will often require an intensification of effort and adjustments to the care provision.Care after death.The End-of-life Care Programme produced a range of tools that can be used for the different stages Note:Managers should not take the idea of “stages” too literally, as if the end-of-life process followed a logical sequence. It clearly does not in real life and the different aspects described under the different stages will apply differently to individuals.End-of-life Care Discussions and Planning (Stages 1 and 2 of the End-of-life Care Pathway)Key points for care homesWhen planning care, the following points should be considered.Residents should be approached sensitively to discuss any end-of-life arrangements they might wish to make, including advance care plans or directives.A record should be made that the topic has been raised so that the same questions need not be asked again.The subject should be dropped if the resident does not want to talk about it — the fact that it has been raised will make it easier for them to return to it later if they wish to do so.Details such as preferred funeral arrangements should be recorded.If the resident is confused or cannot communicate then it is still worth raising the issue to reassure the resident that they will be supported by caring staff until the end.In all cases, the approach taken should be sensitive and respectful of individual feelings and needs.Key points for domiciliary careIf commissioned to provide services to anyone who is vulnerable to collapse, or deterioration in their condition, or is known to have a terminal illness, the service should:check if the person has made an advanced plan or directive that contains instructions that the agency should follow if necessaryif there is no formal plan, the agency should tactfully find out what the person’s wishes and expectations for their care would be on a “what if” basis. Example: “What if our staff arrive at the scheduled time and you are asleep because you have taken an extra dose of morphine to ease your pain, what would you like us to do? Leave you alone, wake you up or come back later (if practical)?”record all wishes and expectations on the care plan; include actions to be taken if there is sudden or anticipated loss of mental capacity due to the changes in the person’s conditionconsult as necessary with other professionals and agencies about the likely future needs as well as the current needsinvolve care staff as appropriate in the discussions and decisions. Care staff could be asked to give their views on what the person’s wishes and expectations are from their experience. For example, “she has said to us (and this has been recorded on the care plan) that she does not want to return to hospital if she takes a turn for the worse”.WillsKey pointsCare providers and managers should:check if the person has made any Power of Attorney and over what in the event of their losing their mental capacity to consent to further care and treatment.always encourage service users to make a Will prior to moving into a care home and to provide instructions about, for example, their funeral arrangements.seek or insist on independent help for a person, eg from a solicitor for anyone who wants to make or change a Will while resident in a care home, or as a service user at home who asks the care service to help in making their Will.prevent the risk of financial abuse (or allegations) by having a policy forbidding any staff to be involved in helping a person prepare their Will or to seek to become beneficiaries of a person’s Will.Living Wills or Advanced Care PlansAdvance care planning involves a person making specific requests in advance about their end-of-life care, for instance, requesting that no attempt is made to resuscitate them (DNAR) when they are unable to give or withhold their consent at the time. Advance statements in which people seek to refuse specific medical treatments are legally binding and doctors are obliged to comply with them.During the COVID-19 pandemic, services users having an advanced care plan (ACP) in place or being able to review existing ACPs is of high importance. This incorporates discussion around how COVID-19 may cause service users to become critically unwell, and a clear decision about whether hospital admission would be considered.Provision of adequate support for service users to make informed decisions during this unprecedented time involves liaising with General Practitioners, community healthcare staff and community geriatricians and other relevant health care professionals to discuss emergency care planning and treatment in person centered discussions.As a consequence, advance care plans may also result in the discussion and completion of Do Not Attempt Resuscitation (DNAR) or Resuscitation Council UK Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) forms.It is important for care service managers to check with relatives for any information such as when the plan was made and if it was made when the person had full capacity. If a person goes into hospital at a critical time, it is essential to provide the hospital staff with all the information available so they make the correct decision.However, a person may become incapable of decision-making when it comes near to the end of their life. This may be due to illness, or treatment, or conditions such as dementia. Then, it is possible for that person to make a decision that will be binding in the future even if they lose their mental faculties.Advance statements refusing treatment are sometimes also called “living wills”, “advance directives” or “advance decisions”. The Mental Capacity Act 2005 included a section about advance decisions to refuse treatment. It places a duty on service providers to support people with impaired mental capacity so that they can make their own decisions about the health and social care that they receive.Under the Mental Capacity Act, care professionals must follow an advance decision if it is valid, otherwise they could be prosecuted.With regard to the dynamic situation being caused by the COVID-19 pandemic, where a service user lacks the capacity, guidance that it is reasonable to develop a plan following best interest guidelines with the involvement of family members or other appropriate individual. To comply with current guidance and shield service users, videoconferencing software on smartphones, tablets and portable computers may need to be used to safely include family members in such discussions.Currently there is no relaxation of Deprivation of Liberty Safeguards (DoLS) associated with the coronavirus pandemic and care homes should ensure that they adhere to DoLS guidance.Providing Quality End-of-life Care (Stages 3 and 4 of the End-of-life Care Pathway)Key points about palliative care in any settingPalliative care is for people who have been diagnosed as suffering from a terminal illness, that is, a disease which cannot be cured. It is usually, although not exclusively, applied to people with cancer.Pain control is a key element of effective palliative care. As far as possible, the dying person should be kept free from pain and the prescribed dosage of analgesia should be administered as directed by the service user’s doctor. There are various drugs commonly used for the terminally ill such as morphine, alcohol, etc which relieve pain.The affected person should decide how much pain relief they want from drugs. Some prefer less medication so that they feel more awake and aware. It is essential that all staff involved in the administration of any drugs follow the agreed procedures for that person as set out in their care plan. If the person suffers nausea or vomiting, anti-emetic drugs may be given, either orally or by injection, a short while before a meal.The GP or nurse will call in a specialist in pain control or care advice if pain proves intractable or unmanageable. Specialist palliative care staff such as Macmillan Nurses can be called upon in this capacity and many hospices run outreach services.Care staff must work in partnership with any palliative care specialists and are able to follow the agreed procedures set out in an individual care plan. They must be competent in their agreed roles and be aware of the limits to their specific roles and responsibilities.“Just in case” or anticipatory medicationManagers should also be aware of any local arrangements and protocols for the keeping of “just in case” supplies of drugs to help with pain management. These can be kept in the care home or a person’s own home where he or she is receiving care at home to be accessed by authorised people (nurses or GPs) when urgently required, particularly out of normal working hours when medical help might not be immediately available.“Just in case” medicines will usually include controlled drugs, so care must be taken to keep them secure pending use, but also to make them quickly accessible if needed. “Just in case” or “anticipatory” medicines should be prescribed as contingencies for individuals like any other of their medication and not be part of a common stock.As predictions are that the NHS is likely to become overwhelmed by the volume of COVID-19 patients, this will be an impact on care homes in the UK and determine how and where many service users with COVID-19 are likely to be cared for.Care home staff are likely to have in depth knowledge of their service users, being able to recognise deterioration in their condition. Expertise in supporting service users with cognitive impairment and behavioral symptoms and the provision in skilled in end-of-life care will be fundamental during this time.Care homes will need to liaise closely with the GPs, and community healthcare staff and community geriatricians to ensure they have palliative care requirements in place and ensure they have anticipatory medications available for end of life care provision.It is hoped that stocks of regularly used anticipatory medicines will be made available to care homes to ensure they can be accessed, prescribed and dispensed at short notice during the pandemic.Personal care for the dyingStandards of personal care should be maintained scrupulously when a person receiving a service is dying. Respect for the dignity of the dying service user is a key factor in their care.Physical care for the dyingPeople who are dying, whatever the cause, can experience a range of unpleasant symptoms. These can include pain, nausea, constipation, agitation, insomnia, oral thrush and breathlessness.The person’s GP, community or palliative care nurse should advise on the appropriate treatment which care staff will need to follow.Care staff should be alert to any pressure sores, which can be a serious problem in people who are bed-bound at the end of their lives, and which will require careful and sensitive treatment.Emotional care for the dyingA dying person will undergo a whole range of emotions and feelings and care staff involved need to be aware of these and be trained to respond to them adequately. The person may be very anxious or frightened about their condition and may be angry or bitter, depressed or confused. Often such emotions and feelings will change rapidly throughout the day and it is common for dying people to be very tearful and labile in mood.Tranquillisers might be prescribed to relieve anxiety. Care workers should be prepared to spend time listening to the person’s anxieties and fears. Patience and understanding are most important qualities in dealing with the dying and the bereaved.Emotional care is often provided by friends, family, ministers of faith and even advocates, befrienders or counsellors. In care homes, where required care managers should enable such visits.With visiting restrictions or lockdowns in place during the coronavirus pandemic, it is an additional pressure to provide additional for support service users emotional needs and address fears about COVID-19, especially while service users are unable to have visitors.The current pandemic situation precludes many of the normal supportive behaviors and rituals at such a time. Service users may die alone because family must be excluded from attending for fear of cross infection and social distancing prevents final goodbyes and embraces which is difficult for staff, families and service users to deal with.Wearing of PPE is vital to protect staff and other service users, but it may add to anxiety from service users and explanations about this need to be frequently made and reassurance given.Relatives’ visits to care homesThe relatives of dying residents in care homes should be supported to visit as often as possible and at any time. They should also be offered comfort and support, and if the relatives are sitting with residents, they should be offered meals and refreshment as appropriate.Dependent on the care homes policy for visitors during the coronavirus pandemic visiting is likely to be prohibited. Where face to face visits are not possible, use of videoconferencing software on smartphones, tablets and portable computers may be possible.Staff should find out at an early stage whether relatives wish to be called at night if a resident deteriorates or dies. They should be kept informed of the resident’s progress and changes in treatment and should be involved as much as possible in the care given. Relatives may often feel helpless and are usually pleased to contribute to the care of the resident, even in small ways. They will usually then be fully involved with the after-death arrangements.Religious and cultural beliefsA person’s plan of care should include reference to any specific cultural and religious needs that care providers should observe and meet before and after their death.Care staff must always respect a user’s religious belief or non-belief and know how to follow the person’s wishes throughout the dying process.During the COVID-19 pandemic situation, service users should still have their cultural and religious beliefs respected as far as possible. However, this may prove complex as the pandemic increases.Faith leaders worked with PHE to input to guidance: COVID-19: guidance for care of the decease, to ensure communities, the funeral industry and the NHS are protected when caring for a deceased person who had a diagnosis or suspected case of COVID-19. Guidance advises that since there is a risk of transmission from the body of a deceased person, mourners are strongly advised not to take part in any rituals or practices that bring them into close contact with the body of a person who has died from or with symptoms of COVID-19. Practices that involve close personal contact with the deceased should only be carried out using the correct personal protective equipment (PPE).When Death is Imminent (Stage 5 of the End-of-life Care Pathway)An imminent or expected death can be defined as a death where a person’s demise is anticipated in the very near future. This may be because they have been terminally ill and their condition has worsened or that they have naturally reached a point where their death is inevitable.When death is inevitable, the person should be allowed to die in peace, quietly and reverently.For care home residents, if relatives wish to be present then this should be enabled wherever possible, if the person wants them there.Current restrictions due to social isolation and shielding must be followed during the pandemic.Note:The NICE Quality Standard QS144: Care of Dying Adults in the Last Days of Life (March 2017), which replaces Standard 11 of the original end-of-life standard (QS13), recommends that people in the last days of their life are identified and specifically:monitored for further changesreceive individual, person-centred care in line with their care planhave available “just in case” medication to ease their distress and painhave their hydration needs assessed daily with a risk assessment to inform hydration options.NICE Critical Care Guidelines (NG159) (COVID-19) This guidance has been developed to maximise safety of patients who need critical care during the COVID-19 pandemic, while protecting staff from infection and includes frailty, clinical guidelines and end of life care information.On 31 March 2020, this guidance was amended to incorporate recommendations and algorithm to clarify when and how to use the Clinical Frailty Scale as part of a holistic assessment.Resuscitation and “Do Not Attempt Resuscitation” (DNAR) DecisionsCardiopulmonary Resuscitation (CPR) is the provision of basic and advanced life support delivered to a person in a state of either respiratory arrest or cardiopulmonary arrest. Cardiopulmonary resuscitation is indicated for those who are unconscious, not breathing, and who are exhibiting no signs of a circulation.The National Council for Palliative Care’s Introductory Guide to End of Life Care in Care Homes recommends that care services should have a resuscitation policy, which should follow the current national guidelines. Care staff should also be familiar with the issues and procedures to be followed if they need to apply resuscitation methods and have been trained to do so.During the COVID-19 pandemic, there is likely to be an increase in the number of urgent decisions to take around cardiopulmonary resuscitation (CPR) in the best interests of individual service users. Advance care planning or reviews may include discussion around and completion of a DNAR or Resuscitation Council UK Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) form with health care professionals.Resulting clinical recommendations, which potentially include, for example, whether or not to be taken to hospital, whether or not to be admitted to ITU or placed on a ventilator may also be recorded on a ReSPECT form, which records recommendation for CPR.When clinicians are considering making a DNACPR recommendation there is a legal requirement for them to discuss this with the service user or those close to them if they do not have capacity for that discussion.Domiciliary care staff could encounter situations when a service user goes into cardiopulmonary arrest while they are providing a service. Agencies need to have a policy on the actions staff should take in such circumstances. The first step will nearly always be to summon the emergency services. However, care staff should also be familiar with the issues and procedures to be followed if they need to apply resuscitation methods and have been trained to do so.The aim should always be to provide resuscitation in the context of a clear framework of advance care planning where the rights, needs, wishes and best interests of service users, staff and relatives are fully protected.The Resuscitation Council (UK) has guidance on decisions about attempting resuscitation, Decisions Relating to Cardiopulmonary Resuscitation, October 2007.Reference to the Mental Capacity Act has been included to cover decision-making for those who lack capacity.A draft DNAR form is available from the Resuscitation Council UK website.This topic also contains a sample resuscitation policy.Public Health England Guidance — Care of the Deceased with Suspected or Confirmed Coronavirus (COVID-19)PHE specific guidance or COVID-19: care of the deceased must be complied with to ensure:the bodies of those who have died as a result of coronavirus (COVID-19) and the bereaved family of the deceased are treated with sensitivity, dignity and respectpeople who work in these services and mourners are protected from infection.As the guidance remains under review and it may be updated in line with the evolving situation, so homes are advised to check this regularly.Staff involved in last offices or care and handling bodies should be aware that there is likely to be a continuing risk of infection from the body fluids and tissues of cases where coronavirus infection has been identified, through either a clinical diagnosis or laboratory confirmation.If a service user dies of suspected coronavirus (COVID-19) in a residential care setting staff should ensure:all service users maintain a distance of at least 2 metres or are in another room from the deceased personall non-essential staff contact be avoided with the deceased person to minimise risk of exposure. If a member of staff does need to provide care for the deceased person, this should be kept to a minimum and correct PPE used as set out in the guidance on residential care provision (gloves, apron and fluid resistant surgical mask)usual processes for dealing with a death in residential care home should be followed, ensuring that infection prevention and control measures are implemented as set out in the guidance on residential care provision.The guidance also states general principles of Standard Infection Control Precautions (SICPs) and Transmission-Based Precautions (TBPs) should apply for bodies suspected or confirmed to be infected with coronavirus. No additional precautions are needed unless Aerosol Generating Procedures (AGPs) are being undertaken.Guidance should be read and followed in conjunction with:Health and Safety Executive (HSE) guidance: Managing infection risks when handling the deceased, which details the standard infection control precautions and transmission-based precautions that should be followed in all occupational settingsAssociation of Anatomical Pathology Technology (AAPT) and Royal College of Pathologists (RCPath) guidance Transmission-based precautions: Guidance for care of the deceased during COVID-19 pandemic, which details the Personal Protective Equipment (PPE) required for Transmission Based Precautions that can be used by any professional involved in the care of the deceased.Disposal and management of waste and laundry needs to be dealt with appropriately and personal waste, such as used tissues, continence pads and other items soiled with bodily fluids and disposable cleaning cloths should be stored securely within disposable rubbish bags, as set out in the guidance on cleaning in non-healthcare settings.These bags should then be placed into another bag, tied securely and kept separate from other waste. This should be put aside for at least 72 hours before being put in the usual household waste bin for disposal as normal.Dirty laundry should not be shaken out to minimise the possibility of dispersing virus through the air and items washed as appropriate, in accordance with the manufacturer’s instructions.Items heavily soiled with body fluids, for example, vomit or diarrhoea, or items that cannot be washed, should be disposed of, with the owner’s or family’s consent.Care After Death (Stage 6 of the End-of-life Care Pathway)End-of-life care guidance correctly points out that care does not stop at the point of death and this should be recognised in the management and practices of the care service. Its responsibilities could include depending on the situation:respecting individual faiths and beliefs and meeting their requirementsbeing aware of verification and certification of death policiesproviding appropriate information to relatives and carers about what to do after a deathoffering information about bereavement support servicesoffering opportunities for staff and other people to discuss or share their feelings about a person who has diedproviding staff, relatives and friends opportunities to remember and show their respect for the dead person.There are several tasks to be done after death, which might involve care homes and domiciliary care agencies in some situations. Each must be carried out sensitively and respectfully by all involved. They include:last officesverification, certification and registrationinvolving relativesdeath certificationthe registration of deathsfuneral arrangements.(See .uk for information on procedures for registering deaths and addressing other aspects following death.)Advice for funerals during coronavirus pandemicDuring the coronavirus pandemic, PHE guidance to ensure funerals are conducted safely, consistent with social distancing principles has been published, general principles include:restriction of the number of mourners who attend so that a safe distance of at least 2 metres can be maintained between individuals.Only the following should attend:members of the person’s householdclose family membersmourners should avoid any direct face-to-face or physical contact.Care homes will need to consider whether it is appropriate for staff to attend funerals and many funeral directors have put in place options for virtual participation in ceremonies.“Public Health” FuneralsThere might be people who die while residents of a care home or at home who do not have next of kin or anyone who is prepared to make or pay for their funeral arrangements, and who might not have left instructions about their after-death care.In these, usually rare, though possibly increasing instances, s.46(1) of the Public Health (Control of Disease) Act 1984 which imposes a duty on local authorities to bury or cremate the dead where it appears that no other suitable arrangements will be made, will apply.The local authority can claim the costs of the funeral from the deceased’s estate, if there are sufficient funds, but they do not have power to reimburse funeral costs where a third party has already arranged the funeral.This suggests that there would be nothing to prevent a care service from arranging such a funeral, but they might have to bear the costs unless it knew how to recover these. The alternative then would be to notify the local authority to discharge its statutory duty to arrange (and if necessary pay for) the person’s funeral.However, where a person dies in hospital, the NHS also has a duty to arrange and pay for the funeral, if there are no relatives or friends who are willing or able to do so. It is possible that depending on local agreements, the NHS Trust would approach the local authority to see if they are willing to arrange and pay for the funeral.Care providers should check with their local authority how it discharges its responsibilities for these so-called “public health” funerals.(For further useful information, see House of Commons Library Briefing Paper 06242 (February 2017), Arranging and Paying for a Funeral, available at parliament.uk.)Effects on Staff and Other PeopleNew or inexperienced care staff might be ill-prepared for the emotional impact that a death of a service user has on them. Over time, they develop skills to handle the death of the people to whom they have been providing a service, but even after years of experience they can still be deeply affected.Care of the dying is a difficult task, especially for young or junior staff, and all staff may need additional support and help to cope with the bereavement. Regular informal staff meetings to discuss issues around death and dying is a common approach and such meetings often prove very helpful as staff will be able to offer each other mutual support and will appreciate that other staff members often have the same experiences and difficulties. Individual staff supervision is another way in which support can be offered.As advice on the pandemic changes daily, care home managers may find it a real challenge to support staff who feel isolated from the rest of the health and social care system.It is important that proactive efforts are made to try to address the impact of the pandemic on the mental health on care home staff. For managers coping with this complex situation, acknowledging issues staff face whilst trying to minimise risks inherent in dealing with such the pandemic will provide ongoing challenges.Multi-professional support networks may help to support care home staff through this. Some local health and social care systems have set up local systems to try to support care home providers and staff.End-of-life Core Competencies and PrinciplesCommon Core Competences and Principles for Health and Social Care Workers Working with Adults at the End of Life (see Publications) (2014) is an aid to workforce development and training in end-of-life care.The key competencies are based on the following areas:communication skillsassessment and care planningsymptom management, maintaining comfort and wellbeingadvance care planningoverarching values and knowledge.(See also .uk for further information on current qualifications and training opportunities.)TrainingTraining is of vital importance in giving care staff the skills and confidence to deal with end-of-life situations. Care managers should make use of the materials and resources that have recently become available to help them set up their staff training programmes.All staff should read the organisation’s policies and procedures relating to end-of-life care and should be helped to understand the service ethos. Staff who regularly carry out end-of-life care should receive specialist training such as that developed from the Gold Standards Framework and the Marie Curie Foundation, which also provides online courses (see its Learn and Develop microsite – requires login).Training resources are available from or via the NHS Improving Quality programme, the Gold Standards for End-of-life Care programme, the Social Care Institute for Excellence and Hospice UK, a charity devoted to supporting hospice care. It has a wide range of short training topic materials.End-of-life care should feature in Care Certificate based induction training.Skills for Care has guidance on end-of-life care training which is provided at different levels in the qualifications framework. Staff preparing for a Diploma in Health and Social Care at Level 2 or 3, who wish to include end-of-life care training in their portfolio, should follow this guidance.List of Relevant LegislationRegulation and Inspection of Social Care (Wales) Act 2016Care Act 2014Social Services and Well-being (Wales) Act 2014Health and Social Care Act 2008Mental Capacity Act 2005Births and Deaths Registration Act 1953Regulated Services (Service Providers and Responsible Individuals) (Wales) Regulations 2017Health and Social Care Act (Regulated Activities) Regulations 2014Further InformationPublicationsA Different Ending. Addressing Inequalities in End of Life Care (May 2016), Care Quality Commission, available on the CQC websiteCommon Core Principles and Competences for Health and Social Care Workers Working with Adults at the End of Life (2014), Skills for Care and Skills for Health, available on Skills for Care websiteArranging and Paying for a Funeral, House of Commons Library Briefing Paper 06242 (February 2017), available at parliament.ukCare Certificate Framework (and Supporting Documents), available on the Skills for Care websiteAdult Advanced Life Support (2015), Resuscitation CouncilEnd of Life Care Resources (2017), available on Skills for Care website websiteGuidance for Providers on Meeting the Regulations (2015)Henry H and Hayes A, Providing High Quality of Care Universally, Evaluation of the End of Life Care Programme (2013), available at Key Lines of Enquiry, Prompts and Ratings Characteristics for Adult Social Care Services (2017), Care Quality Commission, available on the CQC websiteMental Capacity Act 2005 Code of Practice, Department for Constitutional AffairsProviders’ Handbooks, Care Quality Commission, available on the CQC websiteQS13 (and QS144): End of Life Care for Adults, National Institute for Health and Care Excellence (NICE), available on the NICE websiteQuality Requirement 9: Palliative Care, Department of Health and Social Care, available on the GOV.UK websiteSupporting Note: End of Life Care, Care Quality Commission, available on the CQC websiteNICE Critical Care Guidelines (NG159) (COVID-19) available on the NICE websitePublic Health England guidance – Care of the deceased with suspected or confirmed coronavirus (COVID-19) available on the GOV.UK websiteCOVID-19: guidance on home care provision available on the GOV.UK websiteOrganisationsCruse Bereavement Care Bereavement Care exists to promote the wellbeing of bereaved people and to enable anyone bereaved by death to understand their grief and cope with their loss. The organisation provides counselling and support. It offers information, advice, education and training services.Macmillan Cancer Support support people with cancer, providing information and guidance as well as direct care through Macmillan Nurses and training for other healthcare professionals.Marie Curie Cancer Care Curie Cancer Care is a national charity working with people with cancer and other life limiting conditions.NHS England End-of-life Care website with the latest developments in end-of-life care and links to further guidance and resources.Hospice UK organisation (formerly Help the Hospices) has been set up primarily to support the work of hospices, but provides a wide range of information and training materials on end-of-life care.Copyright ? SRG Ltd and/or its affiliates. All rights reserved. ................
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